Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Tuesday, August 9, 2011

RANT: Emergencies, be prepared. It's YOUR responsibility.

"I've never had a crisis!  I don't need to be prepared for a crisis."

NOT!  Just cause you haven't been hit by a bus yet doesn't mean you won't.  Being hit by a bus is a crisis, so is vomiting.

If you have Addison's, you DO need to be prepared for a crisis as does anyone around you.  You CAN die from an untreated crisis.

"But my doctor said I didn't need an injection kit!"

Your doctor is uninformed and doesn't understand Adrenal Insufficiency.  Ambulances DO NOT CARRY SOLU-CORTEF and EMTs (Paramedics are) are NOT PERMITTED TO INJECT SOLU-CORTEF, even if you have your needle, alcohol pads and Actovial on your lifeless chest.  Check with your local EMTs if you don't believe me.

"When I get to the ER, they will know what to do."

Hello!  SO NOT true.  If you've ever been to the ER and they've injected you with Medrol or Dexamethasone, they don't know what they are doing.  Neither Dex nor Medrol are the best choice for an emergency because they take a long time to kick in and have little or no mineralocorticoid properties.

Besides, how long does it take to get checked into the ER and treated, even in the event of an emergency.  It could be too long and you could die.  Really.  During a crisis, death is a possibly.


You start well before a crisis ever happens.

You educate yourself by reading the Addison's Owner's Manual.

Order a bracelet.

You make an appointment with your doctor and request the following:

  • Extra HC in your prescription for stress dosing and to keep stashes in your purse or wallet or whatever.
  • Zofran or the generic 8 mg for nausea.
  • 100 mg Solu-Cortef Actovial  DO not accept anything different.
  • Needle prescription (some states)
Here's some info on what to put in an Emergency Injection kit.  Compile one.  Now.  Know how and when you need to give yourself a shot.  Excellent explanation of how to give a shot from NZ Addison's.  Print this form out and put in your Emergency Injection Kit.

You increase your hydrocortisone if you vomit or have diarrhea.

You carry the Addison's Emergency Protocol form IN YOUR WALLET WITH YOUR INSURANCE CARD.  You also give the Emergency Protocol form to a significant other, parent, child whomever.  

If you don't believe me, here's info from the Lancet.  Emphasis added by me.  From Adrenal Insufficiency by Wiebke Arlt, Bruno Allolio regarding Prevention and Management of Adrenal Crisis. 

P 1189

Prevention and management of adrenal crisis

In a series of 53 patients with chronic adrenal
insufficiency, representing 511 replacement-years, we
noted an overall risk of adrenal crisis needing hospital
admission of 3·3 per 100 years. Risk of crisis was much
higher in primary adrenal insufficiency (3·8 per 100  vs
2·5 per 100 years) and in women (4·4 per 100 vs 1·6 per
100 years) with the highest overall risk in women with
autoimmune adrenalitis (6·5 per 100 years). Most crises
were due to glucocorticoid dose reduction or lack of
stress-related dose adjustment by patients or family
practitioners. Inappropriate stress-related glucocorticoid
adjustment occurs more often in patients older than age
60 years.
All patients and their partners should receive
regular crisis prevention training, including verification
of steroid emergency card or bracelet and instruction on
stress-related glucocorticoid dose adjustment. Patients
should add 5–10 mg hydrocortisone to their normal
regimen shortly before strenuous activities—eg, hiking.
More severe physical stress such as fever requires
doubling of daily doses until recovery. In instances of
vomiting or diarrhoea, glucocorticoids should be
administered parenterally. Some doctors advocate a
hydrocortisone emergency supply for rectal or parenteral
For major surgery, trauma, 
and diseases that require monitoring in intensive care,
patients should receive intravenous infusions 
of 100–150 mg hydrocortisone in 5% glucose per 24 h.
Results of some studies
advocate lower doses 
(25–75 mg per 24 h) for minor or moderate surgical
Management of acute adrenal crisis consists of
immediate intravenous administration of 100 mg
hydrocortisone followed by 100–200 mg per 24 h and
continuous infusion of larger volumes of physiological
saline solution (initially 1 L/h) under continuous cardiac
monitoring. With daily hydrocortisone doses of 50 mg or
more, mineralocorticoid replacement in primary adrenal
insufficiency can be reduced because this dose is
equivalent to 0·1 mg fludrocortisone.
In case of newly
diagnosed (or suspected) adrenal insufficiency,
treatment must not be delayed by diagnostic work-up.
Baseline blood samples for ascertainment of cortisol and
ACTH (optional: plasma renin activity, aldosterone,
dehydroepiandrosterone sulphate) should be drawn
immediately before hydrocortisone administration.

Ok, I'm exhausted. If you don't pull yourself together and fight for extra HC, needles, Solu-Cortef Actovial and Zofran as well as print out the Emergency Protocol and How to give an Injection, you are NOT TAKING RESPONSIBILITY FOR YOURSELF and accepting that you might die if something bad happens to your (food poisoning on a Saturday night, car accident, broken bone while hiking or camping).


Gina in NC :) said...

Thanks Dusty... for caring so much.

Anonymous said...

Thank you Dusty... I am sure you will have saved several lives here... I sent this to my Dr and now have injection kits and extra HC.... and zofran!!!! Sue in Naples

Pip said...

I just picked up a fresh vial of Solu-Cortef today! :)
I was on a first-aid course recently and asked about whether the paramedics could inject me. I was told that they do check for Medic Alert bracelets (which I wear) and would also check for medications (which, when I'm cycling, I carry in my jersey pocket and when I'm trail running I carry in my fuel belt). They don't have the authority to inject, but can call through to their superiors to gain the appropriate approval. So I guess the system here in NZ is slightly more favourable!

Anonymous said...

I think your rants has been the most positive influence on my attitude toward AD. Thankyou.

Unknown said...

Thanks Gina, Sue and Anonymous! I'm so glad I can help!

Pip, think about how long it would take to go into crisis, get someone to call an ambulance, for the EMTs to figure out that you actually needed help with an injection, call for permission and then inject you.

I guess I should have added that it's really important to be given the shot BEFORE the ambulance arrives so that you don't die waiting for the medical personnel to figure out their ass from their elbow.

Lana said... have words of wisdom in this post. When I was first diagnosed with Addison's, I would go into crisis mode on a regular basis due to lack of medical guidance. I discovered, very quickly, that EMS do NOT have control over this situation and your ER situation is usually a PISS-POOR experience because most people with Addisons "look okay" and their vitals are not taken seriously because most medical personnel have not EVER seen an Addison's patient suddenly go into cardio-vascular shock, in front of their eyes. My own doctor had a patient come into the ER with Addison's and she looked okay, they followed protocol, but because her organs were already affected, they could not reverse the situation and she was dead within six hours. A young woman --- she was under 30 years of age. I had also been one of those patients...I would PLEAD with the staff to LOOK UP ADDISON'S DISEASE FAST so that I could start getting treatment. I would be talking as I fought to stay conscious. Some staff members act as if they are insulted because you, a "regular" person without a medical degree is telling them what to do --- other medical staff will actually look it up and fly into motion. I've experienced both angles. Now, I just say to the jerks, "We have your name. If I don't get the treatment I need immediately for my rare disease, you will likely have me as a dead patient and it won't be for lack of a clear warning to you and to your fellow team-members." Sadly, you MUST be very strong and pro-active. My medic-alert bracelet did not help, but it's still worth wearing because it does give you a chance to get closer attention. As for the warnings to the medical staff in an E.R., I have had to say those frustrated words of warning with barely enough energy to make a sound, but you must be able to be loud in clear in your WORDS so your life can be saved. For some reason, with the jerks, this gets them going...not because they are in a hurry to learn about Addison's disease, but because they don't want their name associated with your death. Hopefully you won't ever have this experience, but I live in a Houston's metropolitan area and have a lot of experience with E.R. visits...many times, gun shot victims are in the room next to me and the staff just doesn't feel like an Addison's patient ranks up there with the trauma victim. Many in an E.R. are eager to help, but every now and then you need to know how to get the attention of the slow-mo's who should NOT be working in an E.R. department. Arm yourself by knowing in ADVANCE how to handle various situations. Having the information to hand-out for treatment, as Dusty outlined is an excellent idea. Excellent --- could very well SAVE A LIFE or it can save your life SEVERAL TIMES.

Gina in NC said...

Thanks for the excellent comments!

Before I was officially diagnosed, I was "unofficially" diagnosed by an Internal Med doc who was going to do a stim test the next day. By the time I got home, he had my serum sodium level test back at 114. His office called me to tell me to go to the hospital and get admitted - they would send my paperwork in advance.

My bp was around 80/50, my sodium was at 114, my blood glucose was very low, I was nauseated... but the ER did NOT admit me - they made me wait in the ER... FOR SIX HOURS!

It is only by the grace of God and a peculiar stretch of extreme good luck and strength that I did not go unconscious in that wait.

I want to underscore that Healthcare professionals do NOT know enough about Addison's to serve as "help in a hurry".

I am fine now. Happy and healthy and ON MEDS. I am glad that I got the chance to be that way and that I did not expire in the ER waiting room.

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